How long after diagnosis did you first receive... - CLL Support
How long after diagnosis did you first receive treatment or are you on watch and wait? Feel free to post a comment about what treatment(s) you've had, incl. transfusions eg IVIG and your experiences.
Still watch and wait but finding with lots of exercise the numbers stay under control.
Thus during winter the numbers rise and in summer they go back down again.
Multiple treatments inc lots of blood transfusions. FCR first half of 2012. Rituximab and I.V methyl pred' first half of 2013, Next step alemtuzumab.
Have just had 3rd cycle of 6 cycle treatment of FCR. Cycles 1 and 2 grim as I experienced rare side effect of sodium loss and need for IV fluids. 3rd cycle management much better with daily IV saline alongside the 5 days treatment - a different experience, a lot of hours spent in the day unit much a relief after 2 cycles that required hospital admissions.
It is over 4 years since I was diagnosed with SLL/CLL stage IV. I'm still on watch and wait and after the initial monthly haematology appointments, I now have these every 4 months with blood tests every 2 months or when needed.
My health took a real hit in the first year post diagnosis as I contracted cytomegalovirus (CMV) and was constantly fighting or getting over infections. During the worst of the CMV, fatigue was a major issue and my reaction time was so affected I stopped driving for nearly 2 months. I quit work due to the infection risk and that gave me the time to rebuild my health and work on improving my quality of life.
Prior to the CMV, I'd clock up over 100km per week cycling to work. It took me a long time to rebuild my fitness levels - it was just so easy to overdo it and set back my recovery, but regular walking really helped with that. I can still remember the first time I got on my bike after being too flat to ride it for a few months. The tires were of course flat and pumping them up just about did me in. I still went for a short bike ride and found the gentle exercise was really easy (it was a calm day - or I wouldn't have got home). Cycling really is the most efficient way to get around and thankfully it is pretty flat where I live.
For those newly diagnosed and perhaps already having significant health problems from their CLL, I can attest to the fact that with changes in your lifestyle, you may be able to defer treatment (but be guided by CLL specialists here!). I've been told that my first treatment will probably be with FCR and if frequent infections become an issue, IVIG transfusions, but so far I've avoided them by taking (usually effective) precautions.
Neil
Still watch and wait four years post diagnosis (at 54 years old), but haemaglobin and platelets (in particular) are trending down, so expect treatment time will come soon. I have moderately enlarged lymph nodes in all palpable areas. I had IVIg once prior to dental surgery (involving bone). I had no side affects, and drove back to work after the 3 1/2 hour infusion.
Diagnosed 2006 with CLL
Wait and watch
Started Immunoglobulin IV 2009 to fight infections
Started chemotherapy in July 2012
two cycles of Bendamustine
neutropenic sepsis and CMV virus in bowel in hospital for 3 weeks.
Chemotherapy stopped
Diagnosed with CIPN in February 2013
Back to wait and watch now five Months.
Hi Everyone
I guess I'm lucky. I had my six-monthly check up this morning and my WCC has risen from 43 last November to just 44.24 now.
Diag June 2012, treatment commenced July 2012, six cycles FCR. Next checkup end of June.
Rob
Diagnosed December 2001, Chemo 2002, spleen removed 2004, Started Immunoglobin every 4 weeks in 2005, on long term use clarythromicin, have 6 monthly check ups. bowel cancer and operation 2010 all clear at the moment.
Diagnosed October 2005 with trisomy 12 and low CD38 Treated December 2012 with FCR (6 cycles half dose F and C) Worst events were first reaction to Rituximab, low Haemoglobin of 4.7 for which i needed 6 bags of blood and low neutrophils which delayed part of the treatment. At present I am deliberating whether to go ahead with a CT scan appointment that the nurse gave me for next Thursday(3 weeks after end of treatment).
14 years watch & wait... 6 rounds FR, one month remission, Richter's transformation, 4 round of RCHOP, 2 rounds of RCEP...10 rounds of radiotherapy.... blood work now in range...
I was diagnosed November 2008 started FCR in October 2010. I had very few problems with the treatment, my bloods were reasonable after completion apart from slightly low Hgb, 6 months after tratment my neutrophils dropped to 0.7 resulting in a bad chest infection and hospitalisation, treated with immunoglobulins once a month for 4 months. Bloods back to normal 12 months after treatment, and have stayed that way since, last blood test end of April fine.
Diagnosed 4 years ago W and W until Jan this year when I chose to enter the ORIGIN trial (for patients of 65+ lenalidomide (immune modulator) vs chlorambucil rather than go straight to FCR. I was 65 + 3months! Allocated to lenalidomide. Problems with recurrent high calcium level which appears to be due to test drug and has needed pamidronate. WBC has dropped from around 110 to approx. 80 so far but still on low dose due to calcium problems. I would like to hear from anyone else who's on this trial
Diagnosed in feb 2012, on watch and wait and wonder about non chemo therapies, as someone said earlier. I am in the hospital right now, as my feet have become inflamed and sore due to a complication from last week's nasal surgery, to clear up a nonrelated issue. Can't walk too well, hopefully just an opportunistic infection. See my oncologist next Tuesday. Would like to start on Ibrutinib, oh, well!
Dx. 1995/1996 ! No treatment to date 17/18 years !! No markers done, no prognosis made or scheduled. Just Watch & Wait and come back in 6 months time for your usual blood test and your 5 min chat !! Guess I'm the guinea pig for the NHS's fervent endeavour to save money in the West Miglands area in the hope of a demise from something else before they are forced to professionally address the issue of CLL !!!
Diagnosed in Jan this year and still don't feel unwell in any form and need a lot of W&W years, as am 53.
CLL is still W&W, but am about (already) to start treatment for enlarged spleen (autoimmune problems).
Diagnosed in June 2012 at 54. Now 55 and still W & W. Taking my green tea supplements and maitake mushroom supplements. I am going to a world reknown CLL specialist on June 13th and will post any suggestions he makes.
4 years from diagnosis to treatment, but 7 from first lymphocytosis. Treatment was uneventful in comparison with others here. Now back on watch and wait with 6 monthly check-ups.
Diagnosed July 2009.
Treated March 2010 FC
Became neutopenic sepsis, hospitalised for 2 weeks.
Levels back to normal after the one cycle commenced W&W with check up every 3 months.
February 2011 disease progression and treatment of full dose Rituximab and 50% dose of Fludarabine and Cyclophosphamide (FC)
Despite reduced dose admitted to hospital for 5 days with lower respiratory tract infection
Levels again back to normal after one cycle and resumed W&W
February 2012 disease progression and treatment of full dose Rituximab and 25% FC
Levels again back to normal after one cycle and resumed W&W
November 2012 disease progression and treatment of full dose Rituximab and 25% FC
Four cycles then hospitalised for 5 days with respiratory tract infection
Levels normal and back to W&W with monthly blood checks, however levels now rising rapidly and intervention anticipated in the near future.
Apart from the mentioned infections I feel well and live a full and active life.
Hi, I was diagnosed in 1994. Had Fludarabine late 1998 prior to STC early 1999. I relapsed Aug 2003 and had a DLI in September 2003. I had chronic GVHD and complications for many years. I was treated with photopheresis for 2 years. My health has gradually improved over the years despite relapsing again about 5 years ago.
I am now working full time again after many years of of having to claim benefits, including DLA. Although I have some on going health problems associated with treatment and a rubbish immune system, I am pleased to be on watch and wait and hope to be for many years to come. 
Diagnosed 2006/2007 but blood was changing as from 2002. On watch and wait but I feel dreadful and do not want to go down the route of the 'standard' chemo treatment as yet. I would like to see a milder form of treatment for the symptoms of CLL to improve my quality of life meantime, instead of living in 'fear' of the heavy chemo treatment at some time in the future!
Diagnosed July 2005 and still on Watch and Wait. I attend the Haematology Clinic at the RD&E Hospital in Exeter every four months. My white cell count rose steadily until it was 32/33/34 and then settled down, and is currently 30, with Lymphocytes 28 and Platelets 133.
My spleen is slightly enlarged but not enough to justify treatment, glands not enlarged, but struggling to maintain a "fighting" weight.
The consultant that I see occasionally is OK, but I'm not too impressed with either of the other doctors that I see who call themselves Haematology "Fellows".
At last they are beginning to recognise fatigue as a symptom of CLL but don't know why.
Like Alana397, I feel pretty rough frequently but will resist treatment for as long as I can.
